Laura N Gitlin, Leslie A McClure, Melinda J Webster, Constantine Lyketsos, Helen C Kales
Caregivers were aged 63.8±10.6 years, female (82%), White (83%), spouses (65%), co-residing (87%), and managing 6.4±2.8 behaviors. Persons with dementia were 75.1±10.5 years, male (57%), with moderate-to-severe dementia (62%). Delayed users completed one less DICE session (3.1) than immediate users (4.2) over 3 months (p = 0.0052) and reported enhanced wellbeing (p < 0.001) and confidence managing behaviors (p = 0.0069) but no changes in behavioral symptoms (p > 0.05). Immediate users improved more than delayed users on most outcomes (p < 0.05) except wellbeing, where both groups benefited, and confidence, where only delayed users benefited.
BACKGROUND AND OBJECTIVES: Dementia-related behavioral symptoms are common and distressing to caregivers who lack access to nonpharmacological strategies. WeCareAdvisor, a web-based application, used the DICE (Describe, Investigate, Create, Evaluate) approach to help caregivers identify nonpharmacological strategies. We compared caregivers with delayed access to those with immediate access on engagement and outcomes.
RESEARCH DESIGN AND METHODS: Community-dwelling caregivers (N = 262) were randomized to immediate (n = 131) or 3-month delayed access (n = 131) and interviewed at baseline, 1, 3, and 6-months. Engagement among delayed users (3-6 months) was compared to immediate users (baseline-3 months), along with caregiver distress, confidence in managing behaviors, behavioral frequency by severity (primary outcomes), and number of behaviors, functional dependence and associated upset, caregiver well-being, and communications (secondary).
RESULTS: Caregivers were aged 63.8±10.6 years, female (82%), White (83%), spouses (65%), co-residing (87%), and managing 6.4±2.8 behaviors. Persons with dementia were 75.1±10.5 years, male (57%), with moderate-to-severe dementia (62%). Delayed users completed one less DICE session (3.1) than immediate users (4.2) over 3 months (p = 0.0052) and reported enhanced wellbeing (p < 0.001) and confidence managing behaviors (p = 0.0069) but no changes in behavioral symptoms (p > 0.05). Immediate users improved more than delayed users on most outcomes (p < 0.05) except wellbeing, where both groups benefited, and confidence, where only delayed users benefited.
DISCUSSION AND IMPLICATIONS: Delayed users were slightly less engaged with WeCareAdvisor than immediate users and had fewer areas of improvement except for enhanced confidence managing behaviors and wellbeing. Web-based applications can support caregiver wellbeing but the importance of timely delivery of nonpharmacological strategies for caregivers must be underscored.
CLINICAL TRIAL REGISTRATION: # NCT05012410; URL: https://clinicaltrials.gov/study/NCT05012410Initial registration date: 08/12/2021.